[anndrysdParticipant]

Sorry, I can't comment about diet, but I aim for 2 litres of water and make the rest up with other things, e.g.fruit teas, teas and coffees or soup. After all they count them as fluids when you're an in-patient. I'm a bit more neurotic about it at the moment as my creatinine levels are rocketing about somewhat. I take the view that if I'm sitting ,I can be drinking. Fortunately the local Scottish water is eminently drinkable. I keep a nice French 400ml beer glass for that so it's more palatable. For out and about I have a "bobble" which is refillable and has a water filter as well. It's 500ml.
As to the Dalteparin my thighs have toughenend up. I used to go day about one thigh, tummy , other thigh. I don't have any lack of flesh there, but it was still a challenge to find a non-bruised bit. I would do them first thing in the day to get them over with. I needed the radio or tv on, just slightly too loud and would tell myself that it would be over in a couple of minutes. Now my platelets are well below needing Dalteparin, but I have EPO once a week and use the same priniples- though there's no stinging with it.

Hope this helps.

Ann

[anndrysdParticipant]

A few weeks ago I was meant to have a gastroscopy and a colonoscopy. I was also neutropenic as I had the flu. I had asked both the doctor in haematology and my GP if it would go ahead and they thought it would be ok, but when the gastric guys looked at my blood results (after I had drawn their attention to them), they didn't go ahead as the procedures would release bacteria and my body had no means of fighting them off. Perhaps your medics' concerns about your immunity are similar….

[anndrysdParticipant]

Hi, Sandie,
On the Zometa front, I think it's generally given as an infusion once every four weeks. When I was on it for about four years, I just had it tacked on to my clinic appointment. I only came off it because my kidneys were failing. I now have Bonephos.
On the feeling sick front, has your Mum tried Acupressure Travel bands? You wear them on your wrists. I used them when I had CDT way back in 2006 and also through the 2 SCTs. They didn't stop all the sickness then obviously, but they did make life more comfortable. I would take them off to wash and then after half an hour or so remember that I would be more comfortable if I was wearing them. The added bonus being that they weren't yet another pill.

[anndrysdParticipant]

My platelets went down to 18 when I was on Velcade in the summer, but it was a recognised side effect so I wasn't given a transfusion as they would just drop again. It meant I couldn't have the Velcade, so I was not amused at having a 130 mile round trip for nothing. As they persisted low, the dosage was reduced, but the course extended from 6 cycles to 8 cycles. I'm now at the giddy heights of around 60. The doctor did suggest before I went on holiday at the start of the month that I shouldn't go jumping off anything because of the bleeding risk, but I have managed to restrain myself!

[anndrysdParticipant]

Yes, I liked to get dressed too, even if it was only swapping jammies for t-shirt and joggers. Soft toilet paper and wipes made life more bearable too. Things to entertain you as mentioned by the others – also photos- on a digital photoframe or a multi-picture frame, depending on how much space you have.

All the best.

[anndrysdParticipant]

Yes, Fennel fills the spot after a weekend of rehydration and hospital food – the food at ARI is adequate but not too inspired. I've only been to Fennel for a full meal rather than a snack. It's handy when heading for the airport too.

[anndrysdParticipant]

Yup, it was Morgan McVeighs today. On my 10 days' rest period now, so hopefully will get to stay at home…

[anndrysdParticipant]

Yes! I've been treated at ARI since 2005. In fact this is the 6th anniversary of me leaving hospital after my first stem cell transplant! IO then had 2 years or so remission, then a second transplant(15 months or so remission, but I did go back to work part time teaching secondary in both remissions). Now I've had a year on Revlimid and am now on course 5 on Velcade. I've had lots of ups and downs along the way, but I feel that I get excellent treatment. The main issue is that I live 65 miles away from ARI so travelling is a major problem. With twice weekly trips 2 weeks out of 3, my specialist subject at the moment is "coffee shops of the A96!". There are very long waits at the clinic, too, and the pharmacy seems to rule the roost as far as getting medication is concerned. The record so far is 4 1/2 hours between prescription and delivery! Anyway, I would agree with what Eva said about being on the ward, and I have received good treatment (I'm still here anyway).

[anndrysdParticipant]

I have IgA myeloma, though my consultant has never mentioned that it is more aggressive. I had 2 years and 3 months out of my first SCT (Aug 2006) and 15 months from the second one (Aug 2009). I have since had a year of Revlimid and now am on 4th cycle of Velcade, though I had a 6 hour trip to hospital today to have no medication as my platelets are too low. My concern tonight is whether we go ahead and instal solar panels. I have always gone for trials myself because what have you got to lose???

[anndrysdParticipant]

Plerixafor worked for me 3 years ago. I had 3 doses I think and that gave me enough for a second SCT which gave me another 15 months or so. I didn't like the night panics I developed on two nights though…

[anndrysdParticipant]

I think I had this in 2009 before my 2nd SCT as part of the Myeloma X trial. The main problems were caused getting lines in to me for the adriamycin part. I had a pump for 4 days at the start of each cycle, but that was because my body really doesn't like lines. My Hickman line had to come out early on and then they used a PICC line and there was a certain controversy in the department as it was new to them. This resulted in me being kept in over 2 long weekends – 65 miles from home in winter- I won't go into my husband's dislocated finger after falling on ice in the hospital grounds… I got good results with the treatment though and had about 18 months remission out of the transplant, not too bad for a second one (2 1/2 years for the 1st one) – and I'm a bit older than you from your photo.

[anndrysdParticipant]

This isn't really a suggestion, but last Monday we celebrated our 35th wedding anniversary by revisiting the Queens View, a beauty spot to the north of Glasgow where we had gone for our engagement. We live a long way from there now but circumstances took us to the area. Well, it was tipping down with rain and we couldn't see a thing – Ben Lomond, Loch Lomond -completely invisible. We did have the place to ourselves, surprise, surprise, and the day still felt very special, and I suppose that's the point.

[anndrysdParticipant]

I first had Heparin way back in 2006 when I first started CDT. It was then withdrawn and I developed a DVT. Anyway when I hesitated as the nurse was showing me what to do, my husband offered to do the needful. That soon got me motivated! I also did the GCSF injections and have had Heparin for the last 9 months. I like to do the injection first thing in the morning, and I need to have the radio on!

[anndrysdParticipant]

Have you tried acupressure travel bands? You wear them on your wrists- you can buy them at a pharmacy. I wore them extensively during chemo and SCTs and while I was still sick, I think they did help.

[anndrysdParticipant]

Hi, Penny, Sorry that you are looking at a SCT at all, but if it's any encouragement, I've had 2 SCTs in Aberdeen in 2006 and 2009, and I'm still around to cause trouble. We live 65 miles from the hospital and that was and is a major issue, especially as my husband feels he needs to see me daily. I was in for 4 weeks the first time round and 6 the second, because of delays over the Hickman line. I find the staff hugely caring, capable and efficient, but also cautious in the early release stakes because of the distances involved. As to the recovery time, it seems to be a bit like asking how long is a piece of string. All the best anyway.

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